How Does Being on a Protocol Affect my Child's Treatment?

Whether or not your child is enrolled on a treatment protocol, every attempt will be made to deliver the best known treatment in the safest way possible. Before your child is entered onto a protocol, you will be given a form which describes the treatments being tested, the possible benefits, and the known side effects. After reviewing this information with the treatment team, you will be asked to sign an informed consent document, giving your permission for your child to be enrolled on the study. If your child is old enough to understand, he or she will be asked to review and sign the form also. You should make sure that all of your questions have been answered fully before signing the consent form.

You can choose not to have your child participate in a protocol. This choice will not change how the treatment team feels about you or your child. Every effort will be made to give your child the best treatment for his or her disease, using the standard treatment shown to be the most effective, based on past studies.

Once your child is entered on a protocol, you (and the treatment team) still have choices: if the "best" treatment determined by the protocol is not in your child's best interest, the treatment can be altered, or your child can be removed from the protocol. You or your child can choose not to participate in any part of the research. If the research shows a better way to treat your child than the treatment protocol your child is on, this information will be shared with you and the better treatment made available to your child. You should feel comfortable asking to review the protocol with the treatment team at any point in your child's treatment course.

The road map, or treatment schedule, will help you follow the treatment plan, and will tell you what tests and treatments are coming up in the weeks and months ahead. Make sure your child's treatment team gives you a copy of your child's road map. Your treatment team will try to do all treatments and procedures according to the road map schedule, but minor changes may be made to individualize the plan for your child and family.

The results of the research being conducted will not be known until all the patients on a study have completed the treatment course. However, records are reviewed throughout the study, and if important new information is discovered it will be shared with you, so that decisions can be made about how to proceed in the best interest of your child.